Mike Stelter back from U.S. cancer treatment with goal to bring therapy to Canada

Mike Stelter is back from the United States after receiving a cancer treatment that will hopefully be available in Canada soon thanks to the foundation formed in his son Ben's memory.

Stelter was diagnosed with sarcoma in the spring after doctors found a tumour that had been causing him back pain.

"After everything we've been through with Ben, it was a hard hit for our family," he recalled during a recent interview with CTV News Edmonton.

More bad news followed: The most effective treatment – a type of radiation called proton therapy – isn't provided in Canada.

Instead, he needed to foot the expense of living in Philadelphia for nine weeks while Alberta Health covered the cost of his flight and treatment.

However, the treatment was "pretty easy." Five days a week, for eight weeks, he would receive about 20 minutes of painless radiation at the University of Pennsylvania.

But it was tough to be alone for the majority of the time he was there.

"There's nothing like being with the girls again. Soon as I got back home, my youngest daughter ran and jumped up on me for a big hug and she was crying. She's five years old, and she said it's happy tears to have me back home," he said.

His son Ben, who died at six years old from brain cancer in 2022, helped him pass the time.

"He didn't complain about anything. So I'm doing as good as I can to not complain about anything and just think about Ben and how he would go about it all," Stelter told CTV News Edmonton.

With his treatment now done, the dad is focusing his attention elsewhere: helping other Canadians access proton therapy. 

BRINGING PROTON THERAPY TO CANADA

Little did Stelter know, he was due to learn about proton therapy in 2023 for a different reason.

After Ben died, his family, friends and supporters – including Connor McDavid from the Edmonton Oilers, which made the young superfan a team ambassador – created a charity to invest in pediatric cancer research, advanced medical equipment, special patient experiences, and venture philanthropy.

The Ben Stelter Foundation was approached by groups interested in bringing proton therapy to Canada in early 2023, prior to Stelter being diagnosed.

"It just happened coincidentally," says the foundation's board chair, Ashif Mawji.

According to Mawji, Canada is the only G8 country that does not offer proton therapy.

It is considered more effective than x-ray radiation because protons can be targeted more precisely, which also reduces the amount of side effects patients experience.

"I was shocked because I assume we have the best health care, right? We should have the best of everything," Mawji recalled.

Bringing proton therapy to Canada, which will take about $110 million in funding and about three years of organizing, is the Ben Stelter Foundation's first major undertaking.

"It's quite unnatural for a foundation this new to be tackling something this big," Mawji said, rolling his eyes, "but that's what Ben was… Larger than life. And that's the courage and the drive that we have. We want Ben to be proud."

The foundation is currently sourcing the funding needed.

Not only will having proton therapy available in Canada make it easier on families, but it will reduce the cost of sending patients to the U.S. by two thirds, Mawji estimated.

"We've met a lot of families since that have had to travel down to the United States as well, so it's not a super rare occurrence," Stelter said.

"To be the first one to have proton therapy within Canada is huge."

LIQUID BIOPSY RESEARCH

Proton therapy isn't the only thing the Ben Stelter Foundation has been working on.

Ben's story spread so far that Dr. Liana Nobre, a pediatric neuro-oncologist, learned of him while working in Ontario about one year before her research into liquid biopsy would become another project supported by his namesake legacy.

Liquid biopsy is an alternative to surgery in which markers of disease are identified in easily accessed body fluids like blood, urine and cerebrospinal fluid.

"It will change the way we practice," said Nobre, who moved to Edmonton mid-2023 to build on her PhD work.

"Right now, if we want to look at what's changing in a tumour, how the tumour is presenting, we would have to do a second surgery and sample that tumour again. Once we have access to these fluids that give us this information, we can make decisions much quicker and we'll be able to detect once things are going the wrong way much quicker as well and be able to change treatment paths."

Her goal is to see liquid biopsies being performed clinically in hospital by the end of 2024.

"It's just enormous to be able to do this work in his memory and continue to honour the work that the family is doing as well," she told CTV News Edmonton.

With files from CTV News Edmonton's Jessica Robb